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      Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

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          Abstract

          Background

          Numerous frameworks for supporting, evaluating and reporting patient and public involvement in research exist. The literature is diverse and theoretically heterogeneous.

          Objectives

          To identify and synthesize published frameworks, consider whether and how these have been used, and apply design principles to improve usability.

          Search strategy

          Keyword search of six databases; hand search of eight journals; ancestry and snowball search; requests to experts.

          Inclusion criteria

          Published, systematic approaches (frameworks) designed to support, evaluate or report on patient or public involvement in health‐related research.

          Data extraction and synthesis

          Data were extracted on provenance; collaborators and sponsors; theoretical basis; lay input; intended user(s) and use(s); topics covered; examples of use; critiques; and updates. We used the Canadian Centre for Excellence on Partnerships with Patients and Public (CEPPP) evaluation tool and hermeneutic methodology to grade and synthesize the frameworks. In five co‐design workshops, we tested evidence‐based resources based on the review findings.

          Results

          Our final data set consisted of 65 frameworks, most of which scored highly on the CEPPP tool. They had different provenances, intended purposes, strengths and limitations. We grouped them into five categories: power‐focused; priority‐setting; study‐focused; report‐focused; and partnership‐focused. Frameworks were used mainly by the groups who developed them. The empirical component of our study generated a structured format and evidence‐based facilitator notes for a “build your own framework” co‐design workshop.

          Conclusion

          The plethora of frameworks combined with evidence of limited transferability suggests that a single, off‐the‐shelf framework may be less useful than a menu of evidence‐based resources which stakeholders can use to co‐design their own frameworks.

          Related collections

          Most cited references 67

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          A checklist for health research priority setting: nine common themes of good practice

          Health research priority setting processes assist researchers and policymakers in effectively targeting research that has the greatest potential public health benefit. Many different approaches to health research prioritization exist, but there is no agreement on what might constitute best practice. Moreover, because of the many different contexts for which priorities can be set, attempting to produce one best practice is in fact not appropriate, as the optimal approach varies per exercise. Therefore, following a literature review and an analysis of health research priority setting exercises that were organized or coordinated by the World Health Organization since 2005, we propose a checklist for health research priority setting that allows for informed choices on different approaches and outlines nine common themes of good practice. It is intended to provide generic assistance for planning health research prioritization processes. The checklist explains what needs to be clarified in order to establish the context for which priorities are set; it reviews available approaches to health research priority setting; it offers discussions on stakeholder participation and information gathering; it sets out options for use of criteria and different methods for deciding upon priorities; and it emphasizes the importance of well-planned implementation, evaluation and transparency.
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            The GRIPP checklist: strengthening the quality of patient and public involvement reporting in research.

            The aim of this study was to develop the GRIPP (Guidance for Reporting Involvement of Patients and Public) checklist to enhance the quality of PPI reporting. Thematic analysis was used to synthesize key issues relating to patient and public involvement (PPI) identified in the PIRICOM and PAPIRIS systematic reviews. These issues informed the development of the GRIPP checklist. The key issues identified included limited conceptualization of PPI, poor quality of methods reporting, unclear content validity of studies, poor reporting of context and process, enormous variability in the way impact is reported, little formal evaluation of the quality of involvement, limited focus on negative impacts, and little robust measurement of impact. The GRIPP checklist addresses these key issues. The reporting of patient and public involvement in health research needs significant enhancement. The GRIPP checklist represents the first international attempt to enhance the quality of PPI reporting. Better reporting will strengthen the PPI evidence-base and so enable more effective evaluation of what PPI works, for whom, in what circumstances and why.
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              The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda.

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                Author and article information

                Contributors
                Role: Professortrish.greenhalgh@phc.ox.ac.uk
                Role: Researcher
                Role: Researcher
                Role: Clinical Academic Trainee
                Role: Researcher
                Role: Researcher
                Role: Patient Adviser
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                22 April 2019
                August 2019
                : 22
                : 4 ( doiID: 10.1111/hex.v22.4 )
                : 785-801
                Affiliations
                [ 1 ] Nuffield Department of Primary Care Health Sciences University of Oxford Oxford UK
                [ 2 ] North Central London Academic Foundation Programme London UK
                Author notes
                [* ] Correspondence

                Trisha Greenhalgh, Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK.

                Email: trish.greenhalgh@ 123456phc.ox.ac.uk

                Article
                HEX12888
                10.1111/hex.12888
                6737756
                31012259
                © 2019 The Authors Health Expectations published by John Wiley & Sons Ltd

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                Page count
                Figures: 5, Tables: 3, Pages: 17, Words: 11901
                Product
                Funding
                Funded by: National Institute for Health Research
                Award ID: BRC-1215-20008
                Categories
                Original Research Papers
                Original Research Papers
                Custom metadata
                2.0
                hex12888
                August 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.6.9 mode:remove_FC converted:11.09.2019

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